WOW! I still can’t believe we raised over $5,000 for Bello Machre. Thanks to all of you who donated and supported us for the walk.

Catherine and Sarah after the walk.

Catherine will use the money to help with surgery expenses that are upcoming. She’s getting ready to have a pretty major surgery and I’ve had a hard time dealing with it, frankly. For a long time, I didn’t even talk about it. Then, I talked too much about it and was too cavalier. Now, I am trying to deal with the logistics on top of the extraordinary stress of thinking about just what a big deal this surgery actually is.

Don’t get me wrong. She’ll be in great hands with Dr. Freeman Miller at AI DuPont Hospital for Children. He’s among the best, if not the best, in the world. In fact, we asked a knowing doc at Hopkins if we should consider someone there for another opinion or as an alternate provider and he shook his head immediately and said, “No. Go there. You’ll be in great hands – he’s the best.” I’ll let that doc remain anonymous because if you know anything about Hopkins, you know they never refer out of their system. Even US News and World Report cites the accolades of the orthopedic group at AI duPont and ranks them #5 in the country. That’s all comforting.

But this is a big surgery. Catherine’s spine is curved 78 degrees so Dr. Miller will straighten it and will use a rod to hold it straight.

See the marker at the 78 degree turn.

It really hit me when our therapist said, “Well, let’s do a lot of ball work because she won’t be able to do much after surgery.”

“You mean while she heals?” I asked.

“Well, no. She’ll not be able to bend over the ball after the surgery. Her spine will be stiff.”

Ugh! So, my snuggly little girl won’t be so snuggly anymore. The one who has cuddled up to my skin and Brian’s chest since she was 3 days old will sit erect. I’m sure we’ll find a way – some odd way – to hold her so we can snuggle together. It just won’t be the same. Actually, after every big event for Catherine – it’s never the same.

Her spine is not just curved side-to-side. It’s also curved front to back. In fact, we found out just how severe it was when we thought we felt poop blocked in her intestines. Unfortunately, she got the wrong end of all the treatments to try to fix that before we had an x-ray in the ER and they finally said, “What you feel through her belly is her spine.” Yowzie. I literally didn’t believe it. When we went to see Dr. Miller, he immediately confirmed it.

You can see how much her spine is curving forward making her whole pelvis tip severely.

Hopefully though, we’ll get the results a friend’s son got. Hopefully Catherine will breathe better and get less seizures and not be in the pain she seems to be in now. And hopefully her organs will spread out and grow correctly and enable her to thrive. I even think that if a rod is holding her spine straight then maybe she’ll be able to hold her head upright, too. I figure it’s possible and a girl’s gotta dream – especially in the face of this particular surgery. So, despite the laundry list of things this surgery will bring – all in some weird rule of “fives” – through some grace of God I find a tiny ray of hope. I’ll confess though. It’s really tiny.

She’ll be on the table for 5 hours. She’s expected to need 5 pints of blood. We’ve been told to plan on 5 days in the ICU (what surgery requires FIVE days in the ICU anymore?) and then another 5 days in the regular hospital. Our surgeon told us it’s the equivalent of an adult going through open heart quadruple bypass surgery. Yeah, it’s sort of a big deal. I’ll be hanging onto that sliver of hope picturing my little girl sitting straight and maybe even holding up her head.

And like everything in Catherine’s world since the day she was born, oh so small. We’ll sit in the waiting room in a few weeks, and we’ll just have to wait and see.

I recently read a blog post from a woman about what not to say to a parent of a child with disabilities. I recalled thinking after I read the post – and I actually replied to it myself – that I didn’t feel the way she did. In fact, I like it when people ask me questions about Catherine. It’s more honest, I believe. And I prefer to deal with things directly and then get past the discomfort but at least have the authentic thinking and feelings and questions out there.

But just this week, I learned what not to say to the parent of a kid with disability.

Catherine has a double ear infection and a busted ear drum. “Perforated” is the medical euphemism, I believe, but the reality is that it’s busted. I ache that we missed it. One of her caregivers noticed green fluid coming from her ear, so Brian took her to the doctor. She’d had a fever for 5 days, but with all the flu and cold in our house this winter, we just thought she was simply running a bug. Ugh! I feel like the worst mom ever.

When Brian told me about the diagnosis as I drove home from work, the first question I asked him was, “Will it affect her hearing?” He said the doctor said not, but since she is already so sensory deprived, that answer didn’t really satisfy me, and it won’t until I see that she responds the same to sound over time. So even though the doctor says not to worry, I’m not so sure.

The next day, after her diagnosis, I was taking report from the nurse who had watched her overnight. She’d had a good night, and he relayed that he understood what bad ear infections she had. “Yeah,” I said, “I just hope it doesn’t affect her hearing.”

The nurse proceeded to tell me a story about himself incurring an ear injury after firing a shotgun and experiencing some hearing loss. “It was permanent,” he said. He must have realized what he’d said because he added, “But only at certain frequencies,” I suppose thinking that might make me feel better.

Don’t do that.

Don’t tell the mom of a child with severe disabilities about your experience losing the very thing she hopes her kid doesn’t lose. Even if it only happened to you just a little bit.

We’re entering another phase where instead of being a mom, I become a scientist. Instead of snuggling and hugging and cheering, we will observe and track and analyze. I don’t especially like these phases, but long ago I learned that we all do things we don’t like, right?

Catherine has been having “episodes” every night, and they’re getting stronger and more frequent. Something wakes her and moments later, her little body is trembling. Sometimes it’s intense. Sometimes it’s mild. Sometimes it’s a steady tremble. Sometimes it pulses in waves. Picking her up used to stop them; now it just makes us feel better.

We had a sleep study done at KKI in July before her surgery and despite all the wires and equipment on her body, she finally fell asleep, but the data didn’t indicate any seizures. It indicated a mild obstructive sleep apnea, but no one seems too concerned about that.

Could YOU sleep with all this equipment on you?

So, we don’t call these episodes “seizures” – yet. Our nurses call them tremors. One even calls them convulsions. And one “episode” may have actually been a seizure that should have been medicated. Enough.

I finally broke down and made “the chart.” I have a colleague – let’s call him a friend, actually – who is in awe of the way we have to track data about Catherine. He’s responsible for analytics in our company, so for him to be in awe really surprised me. He’s helped me analyze Catherine’s eating data in the past, so we could show the county whether she was learning to eat or not. Data says she is. I actually like data.

When I pulled out the computer on a recent flight to see a client, I asked him how to build the chart in Excel. He starts everything with questions, so I tried to give the answers before he even asked. But one part continued to challenge his thinking.

“Wait, you really need to track 25 things?” he asked.

“Well, it may not be 25,” I said, “but it’s something approaching that. It’s not five – I know that.”

He asked some good questions and helped me at least figure out what to put on the x and y axis. What mom talks about her kid as relates to an x and y axis? He gave me some other tips and then left me to figure it out in greater detail.

My chart fits on two – did you read that right? – TWO – 11×17 pages and actually tracks 38 variables. That’s insane!

But what’s more insane is that we have to do this. I get that the docs need a better look at what’s happening. And I get that we’re waiting for another sleep study. (I’m sure that’s about whether insurance will pay for it). I also get that the data will hopefully show us a pattern. But there is a part of this that annoys me, frankly.

When we were at the sleep study doctor’s office, I suggested we needed to get several doctors in the room together to discuss the situation. Everyone was approaching it from his or her own view and specialty. No one was looking at the little girl and all the things going on in that little girl to think about what might be happening overall. Is it hormonal? Does feeding her wake her up and cause the episode? Are they actually seizures? I think the neurologist and the sleep doc and the endocrinologist and the developmentalist need to get together and actually talk – novel idea, huh? The sleep doc told us they probably couldn’t do that – but they could email each other.

What? You work in the same building!

And so the real reason I have to be the one who builds the chart, trains the nurses, tracks the data and then analyzes it is because I’m the only one who cares enough to do it. Yet, when I walk into the doctor’s office the next time – with my 38-variable chart filled out for weeks, the doctors will be impressed. And maybe, just maybe, they’ll get this thing figured out.

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…